BEGIN:VCALENDAR
VERSION:2.0
PRODID:-//ERDERA - ECPv6.15.20//NONSGML v1.0//EN
CALSCALE:GREGORIAN
METHOD:PUBLISH
X-ORIGINAL-URL:https://erdera.org
X-WR-CALDESC:Events for ERDERA
REFRESH-INTERVAL;VALUE=DURATION:PT1H
X-Robots-Tag:noindex
X-PUBLISHED-TTL:PT1H
BEGIN:VTIMEZONE
TZID:Europe/Brussels
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20240331T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20241027T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20250330T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20251026T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20260329T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20261025T010000
END:STANDARD
BEGIN:DAYLIGHT
TZOFFSETFROM:+0100
TZOFFSETTO:+0200
TZNAME:CEST
DTSTART:20270328T010000
END:DAYLIGHT
BEGIN:STANDARD
TZOFFSETFROM:+0200
TZOFFSETTO:+0100
TZNAME:CET
DTSTART:20271031T010000
END:STANDARD
END:VTIMEZONE
BEGIN:VTIMEZONE
TZID:UTC
BEGIN:STANDARD
TZOFFSETFROM:+0000
TZOFFSETTO:+0000
TZNAME:UTC
DTSTART:20240101T000000
END:STANDARD
END:VTIMEZONE
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20260225T130000
DTEND;TZID=Europe/Brussels:20260225T140000
DTSTAMP:20260411T173654
CREATED:20260126T162223Z
LAST-MODIFIED:20260126T162320Z
UID:10000036-1772024400-1772028000@erdera.org
SUMMARY:Launching a New Guide to EDI/Inclusion in PPI
DESCRIPTION:Do you know that equality\, diversity and inclusion matter in PPI\, but aren’t sure where to start?\nHave you ever wondered whether your PPI approach is genuinely inclusive\, and what you could do to improve it? \nYou are warmly invited to a short webinar to launch a new\, friendly guide to Equality\, Diversity and Inclusion (EDI) in Public and Patient Involvement (PPI). This has been developed by the Rare Disease Clinical Trial Network (RDCTN) and Health Research Charities Ireland (HRCI). \nWhether you are just starting out with PPI or looking to strengthen your approach\, the guide offers clear\, practical actions to help make involvement more inclusive. Co-created with people with lived experience\, family members\, charities and researchers\, it draws on open discussion and shared learning from two dedicated workshops. \nInspired by the diverse rare disease community\, the practical steps outlined in the guide apply across all areas of research. At the launch event\, you’ll hear short reflections from researchers\, patient partners and sector leaders\, and take part in a shared conversation about how to move from intention to action in EDI and PPI. \nIf you’ve ever asked yourself\, “Are we doing this well?” or “How could we do this better?”\, this session is for you. We hope you can join us. \n 
URL:https://erdera.org/event/launching-a-new-guide-to-edi-inclusion-in-ppi/
CATEGORIES:Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/download-23-e1760968909969.png
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260210T170000
DTEND;TZID=UTC:20260210T183000
DTSTAMP:20260411T173654
CREATED:20250605T142523Z
LAST-MODIFIED:20260112T143230Z
UID:10000035-1770742800-1770748200@erdera.org
SUMMARY:Webinar: Enhancing patient-centricity in Rare Disease Clinical Trials
DESCRIPTION:The final webinar from RealiseD project focuses on what truly matters: the patient. Rare disease trials often struggle to capture outcomes that reflect patient priorities but RealiseD is working to change that. Rudradev Sengupta\, Senior Trial Design Lead at One2Treat\, will present an approach that embeds patient voices into every stage of trial design and analysis. By using hierarchical endpoints and net treatment benefit\, this framework balances benefits and risks in alignment with patient preferences\, enabling transparent discussions among stakeholders and ensuring that success is defined by what matters most to patients. This is a vital conversation for anyone committed to making clinical research more humane and impactful.
URL:https://erdera.org/event/enhancing-patient-centricity-in-rare-disease-clinical-trials/
CATEGORIES:Clinical Research,Training & Education
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/8.jpg
LOCATION:https://erdera.org/event/enhancing-patient-centricity-in-rare-disease-clinical-trials/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260203T170000
DTEND;TZID=UTC:20260203T183000
DTSTAMP:20260411T173654
CREATED:20250612T142243Z
LAST-MODIFIED:20260112T143250Z
UID:10000034-1770138000-1770143400@erdera.org
SUMMARY:Webinar: Single arm\, RCT or something in between – how to enrich clinical trial design and analysis in rare diseases
DESCRIPTION:Single-arm trials remain a cornerstone of rare disease research\, but their limitations and complexities cannot be ignored. In the third webinar\, experts Yulia Dyachkova (Merck Healthcare)\, Jenny Devenport (Roche)\, Cornelia Dunger-Baldauf (Novartis) abd Guillaume Canaud will lead a deep dive into the evolving role of SATs in drug development. The discussion will cover regulatory and HTA perspectives\, review case studies of success and failure\, and explore advanced statistical methods designed to optimise trial design. This session is not just about understanding the current landscape—it is about shaping the future of evidence generation for rare and ultra-rare diseases.
URL:https://erdera.org/event/webinar-single-arm-rct-or-something-in-between-how-to-enrich-clinical-trial-design-and-analysis-in-rare-diseases/
CATEGORIES:Clinical Research,Training & Education
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2026/01/6.jpg
LOCATION:https://erdera.org/event/webinar-single-arm-rct-or-something-in-between-how-to-enrich-clinical-trial-design-and-analysis-in-rare-diseases/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260120T170000
DTEND;TZID=UTC:20260120T183000
DTSTAMP:20260411T173654
CREATED:20250612T141010Z
LAST-MODIFIED:20260112T143313Z
UID:10000033-1768928400-1768933800@erdera.org
SUMMARY:Webinar: Evidence Assessment Framework – The need for a mindset shift for developers\, regulators and HTAs
DESCRIPTION:The second webinar from realiseD project turns the spotlight on one of the most critical issues in rare disease research: the generation and assessment of evidence. François Meyer\, a leading consultant in health technology assessment\, will examine why current frameworks often fail to deliver predictable and aligned outcomes\, resulting in delays and inequalities in patient access. The session will explore the global and European initiatives aimed at addressing these shortcomings and present the RealiseD consortium’s efforts to advance scientific and operational solutions. More importantly\, it will advocate for a fundamental shift in mindset—one that embraces flexibility and innovation in the way evidence is generated\, interpreted\, and assessed.
URL:https://erdera.org/event/evidence-assessment-framework-the-need-for-a-mindset-shift-for-developers-regulators-and-htas/
CATEGORIES:Clinical Research,Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/01/General-Visual.png
LOCATION:https://erdera.org/event/evidence-assessment-framework-the-need-for-a-mindset-shift-for-developers-regulators-and-htas/
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=UTC:20260113T170000
DTEND;TZID=UTC:20260113T183000
DTSTAMP:20260411T173654
CREATED:20250612T140139Z
LAST-MODIFIED:20260112T143331Z
UID:10000031-1768323600-1768329000@erdera.org
SUMMARY:Webinar: Realising clinical trials in ultra‑rare diseases
DESCRIPTION:The opening webinar sets the stage for the RealiseD initiative\, introducing its vision and methodology for tackling the unique challenges of ultra-rare disease trials. Professor Dieter Hilgers of Sigmund Freud University will guide participants through the project’s objectives and structure\, highlighting how RealiseD aims to foster collaboration from the earliest stages of research. The discussion will address the obstacles that have long hindered progress in this area and propose practical solutions\, while also establishing shared principles for interpreting data in ultra-rare conditions. This is an opportunity to be part of a transformative movement that seeks to redefine what is possible in rare disease research.
URL:https://erdera.org/event/webinar-realising-clinical-trials-in-ultra-rare-diseases/
CATEGORIES:Clinical Research,Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2026/01/RealiseD-Visuals-Webinars-2026-3.png
LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;TZID=Europe/Brussels:20251120T080000
DTEND;TZID=Europe/Brussels:20251121T130000
DTSTAMP:20260411T173654
CREATED:20251023T134321Z
LAST-MODIFIED:20251222T151641Z
UID:10000020-1763625600-1763730000@erdera.org
SUMMARY:Networking of underrepresented countries for the enhancement of rare disease research
DESCRIPTION:ERDERA invites researchers\, clinicians\, patient representatives\, funders and national authorities from underrepresented countries to a two‑morning virtual workshop focused on strengthening collaboration in rare disease research. Click here for more specific information on what underrepresented countries are. \nThe event will present new evidence from an ERDERA survey across more than 30 countries and co‑create practical solutions to improve inclusion\, networking and capacity development. Outcomes will inform ERDERA guidance for national‑level actions. \nWhy this matters\nPeople living with a rare disease in smaller or less‑resourced countries often face the longest waits for diagnosis and the fewest opportunities to join research and trials. By aligning needs\, sharing good practice and designing realistic support measures\, this workshop aims to accelerate earlier diagnosis and more inclusive research across Europe. \nWhat to expect\n\nEvidence briefing: key findings from ERDERA’s year‑one survey of underrepresented countries\, complemented by insights from related European initiatives (e.g. ERA‑LEARN\, Alliance4Life).\nBest‑practice snapshots: short talks from patients\, clinicians\, researchers and funders\, plus ERDERA workstreams (diagnostics\, clinical trials\, education & training\, National Mirror Groups) on practical measures that work.\nFacilitated parallel sessions: multi‑stakeholder\, multinational groups (using Miro) to identify top challenges on day one and co‑develop actionable solutions on day two across five priorities: policy\, collaboration\, funding\, technical assistance and patient engagement.\nNext steps: synthesis to inform ERDERA guidance for national capacity development in underrepresented countries.\n\nWho should join\n\nParticipants from underrepresented countries: patient organisations\, clinicians\, researchers\, universities\, hospitals\, ministries\, and research‑funding bodies.\nERNs\, SMEs/industry\, and European infrastructures interested in equitable participation and capacity building.\n\nPractical details\n\nDates and time: 20–21 November\, 09:00–13:00 CET each day\nFormat: Online (MS Teams)\nCost: Free; places prioritised for stakeholders from underrepresented countries\nAccessibility: Plain‑language facilitation; collaborative whiteboards; recordings available to registered participants\nRegistration: Register for the workshop\n\nProgramme\n1st day\, November 20th\, 2025\n08:30 – 09:00\nLaunching for on-line participants \n09:00 – 09:15\n\nPresentation of workshop aims and explanation of the foreseen activities\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:15 – 09:30\n\nOverview of the survey on the needs of underrepresented countries (UC) in ERDERA T24.1\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:30 – 09:45\n\nBridging the Innovation Divide in Europe: The Role of Alliance4Life in Fostering Research Excellence in Central and Eastern Europe\nKarolis Ažukaitis\, Assoc. Prof.\, MD\, PhD\, Vice-Dean for Research at Vilnius University\, Pediatric Nephrologist at Vilnius University Hospital Santaros Klinikos (Lithuania)\n \n09:45 – 10:15\nBest practice examples from: Patients\, clinicians/ researchers: \n· EJPRD project from JTC 2020 ENISNIP\nRobert Jech\, Prof. MD\, PhD\, Head of the Center for interventional treatment of movement disorders\, Department of Neurology\, 1st Faculty of Medicine\, Charles University and General University (Czech Republic) \n· EJPRD project from JTC 2021 SeeMyLife and network support scheme event (European Aniridia Conference 2020)\nArvydas Gelžinis\, MD\, PhD\, Head of the Department of Pediatric Eye Diseases\, The Hospital of Lithuanian University of Health Sciences Kauno klinikos; Irma Bylė\, president of Aniridia Lithuania association (Lithuania) \n10:15 – 12:45\nParallel workshops (supported with MIRO): what are the main challenges for the networking of underrepresented countries and their engagement into rare disease research? \n12:45 – 13:00\nReconvening for the first feedback to plenary \n2nd day\, November 21st\, 2025\n08:30 – 09:00\nLaunching for on-line participants \n09:00 – 10:00\n\nBest practice examples from: Funding agencies: presentation of Lithuanian Research Council;\nŽivilė Ruželė\, PhD\, Advisor at the International Cooperation Unit at Research Council of Lithuania\, ERDERA Networking Support Scheme Secretariat (Lithuania)\n \nERDERA Workstreams\, measures for engagement of underrepresented countries: \n· Diagnostic research workstream (WP6 and WP8)\nProf. Katrin Õunap\, University of Tartu\, Institute of Clinical Medicine & Center of Rare Diseases\, Genetic and Personalized Medicine Clinic\, Tartu University Hospital (Estonia) \n· Education and training (WP20)\nBirutė Tumienė\, Assoc.Prof.\, MD\, PhD\, Vilnius University\, Faculty of Medicine\, Head of the Division of Clinical Genetics and Genomics\, Centre for Medical Genetics\, Vilnius University Hospital Santaros Klinikos (Lithuania) \n· National Mirror Groups (WP23)\nMadara Auzenbaha\, Assoc. Prof. Dr. MD\, lead researcher in Riga Stradins University Scientific Laboratory of Molecular Genetics\, Head of Rare Diseases Coordination Center\, Children’s Clinical University Hospital of Riga (Latvia) \n10:00 – 12:45\nParallel workshops (supported with MIRO): what are the main solutions to enhance networking of underrepresented countries and their engagement into rare disease research? \n12:45 – 13:00\nWrap-up and next steps
URL:https://erdera.org/event/networking-of-underrepresented-countries-for-the-enhancement-of-rare-disease-research/
CATEGORIES:International Alignment,Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2025/09/pexels-karolina-grabowska-4977472-min-scaled.jpg
LOCATION:
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20251103
DTEND;VALUE=DATE:20251105
DTSTAMP:20260411T173654
CREATED:20251001T145433Z
LAST-MODIFIED:20251009T141651Z
UID:10000013-1762128000-1762300799@erdera.org
SUMMARY:XVII Foresight Training Course | From research to access: how does Europe speed up the availability of medicines for unmet needs?
DESCRIPTION:The course will focus on the current status and advancements of clinical research especially to address unmet medical needs. Innovative methodologies\, regulatory challenges\, and the involvement of adolescents in clinical trials will be discussed. The state of the art of funding strategies and investments will be reviewed\, considering public incentives and public-private funds at EU\, national and regional level. Access-related issues\, such as joint procurement\, national policies\, HTA\, and patient involvement in decision-making and access procedures will also be covered. \nAdditional details and registration here.
URL:https://erdera.org/event/xvii-foresight-training-course-from-research-to-access-how-does-europe-speed-up-the-availability-of-medicines-for-unmet-needs/
CATEGORIES:Clinical Research,Expertise Services,Funding,International Alignment,Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/png:https://erdera.org/wp-content/uploads/2025/10/Captura-de-pantalla-2025-10-01-165257-e1759330452170.png
END:VEVENT
BEGIN:VEVENT
DTSTART;VALUE=DATE:20250908
DTEND;VALUE=DATE:20250909
DTSTAMP:20260411T173654
CREATED:20250725T095359Z
LAST-MODIFIED:20251009T141727Z
UID:10000010-1757289600-1757375999@erdera.org
SUMMARY:Applications for Open Academy Schools 2026
DESCRIPTION:From 25–28 May 2026\, Barcelona will host the next EURORDIS Open Academy Schools. Applications for the Medicines Research & Development School and the Scientific Innovation & Translation School open on 8 September 2025. Subscribe to the Open Academy and EURORDIS newsletters to receive the link as soon as the call goes live. \nWhat awaits in Barcelona\nParticipants will move between School-specific sessions and joint workshops on patient engagement and leadership. The blended design—e-learning modules\, pre-training webinars and four intensive face-to-face days—also features:\n• an off-site visit to a Barcelona research centre or hospital\n• extensive contact time with faculty and EURORDIS staff\n• structured opportunities to exchange experience with fellow advocates and researchers \nLast year’s edition achieved “high engagement\, deeper impact”\, as highlighted in ERDERA’s 2025 review article (read it here). Alumni have since helped form Community Advisory Boards\, co-designed funded research proposals and served as patient experts at the European Medicines Agency. \nData\, Ethics & AI: dates still to be confirmed\nA second run of “Navigating Rare Disease Research: Data\, Ethics and AI in Europe” is planned for 2026. Unlike last year\, the call for applications will not be issued in September; dates will be announced once the team finalises a new hybrid format that combines six to eight hours of online sessions over six months with one in-person training day. Stay tuned via the newsletters. \nFunding and access\nWith support from the European Rare Diseases Research Alliance (ERDERA)\, eighty places in Barcelona are fully funded. ERDERA covers course fees\, three nights’ accommodation (including a registered carer where needed) and meals during training hours.
URL:https://erdera.org/event/applications-for-open-academy-schools-2026/
CATEGORIES:Patient Involvement (PPIE),Training & Education
ATTACH;FMTTYPE=image/jpeg:https://erdera.org/wp-content/uploads/2025/08/Open-Academy-Schools-2025-High-engagement-deeper-impact.jpg
END:VEVENT
END:VCALENDAR